I had a lot of good conversations this week with friends, family, and strangers...which made choosing one for this post a bit challenging. As a matter of fact, the idea that one conversation would have to stand out kind of haunted and distracted me all week. But I know what I want to write about.
I am an honorary member of the Dallas/Ft. Worth area's Families of Type 1 Diabetics Group - or DFWFOTOD. It's primarily a yahoo listserv group with an equally active Facebook wall comprised of parents of young type 1s.
I don't really fit in there in the sense that I'm not parenting a child with type 1 diabetes. But I approached the group's organizer, Alison, and she graciously let me in, explaining that they wanted to reserve the sanctity of the space for parents to find support and that it wasn't intended to be a group for adult type 1s, but that I could join. So I try to behave.
They've recently been trying to organize some mom's nights out and Alison sent me a private note letting me know that I was welcome. That I could even bring my newborn. So this last Thursday, I had Hubs rush home from work so that I could attend one.
As usual, I overcome any awkwardness by asserting myself and pretending as though I belong wherever I am. It's the same way I conduct myself in the yahoo group. Actively participating in conversations if I have any relevant experience to share. Staying silent and learning when the conversations turn to summer camps and 504s and which local pediatric endos are the best.
The D-mom's night out was no different. With Baby Dibbs on my shoulder, I had less mobility through the crowd than I might normally have, so for most of the event I settled into a deep leather armchair in the living room. It was there I had my best conversation.
Her daughter had just started on an insulin pump and was fairly recently diagnosed and she had a lot of curiosities, questions. I love those conversations. I can talk about what I know about companies, cgms, pumps, future technologies on the horizon, etc.
But that's not the bit that struck me.
"Do you still test yourself at 3am? When can I stop testing her in the middle of the night?"
It's an impossible question to answer for someone else. Hell, it's impossible to ask of myself.
There is a tiny tiny tiny tiny percentage of type 1s who die in their sleep from a cardiac problem brought on by a low blood sugar. But it happens. I didn't know if she knew that. My mom hadn't.
I told her that I still test in the middle of the night if I have questions about how accurate my basal insulin dosage is set. But freak things can happen.
I myself have never had a seizure from a low blood sugar in my sleep, but it happens.
At the root of that question is a secret one. The unspeakable.
"When can I stop worrying she will die in her sleep?"
For some parents, once the threat of SIDS has passed, they sleep a little easier. But then you read about SUDC (sudden unexplained death in childhood) and your goosebumps prickle again.
I told her that my own parents never tested me in the night...but that I found out in my adulthood that my mother used to come in and check if I was breathing every night. If I was sweaty, she'd wake me. My body has always been very good about waking me when my blood sugar drops. I wake up drenched in sweat.
But that can change over time. Hypounawareness is a genuine threat to children, to long-time diabetics, to new moms, etc. It's why alert dogs and continuous glucose monitors are so popular.
I told her that I wear a CGMS and that my husband likes it near his pillow where he can check on it at night. I told her that Hubster checks to make sure both kids...and I...are still breathing several times a night.
I hate that I burden him with that.
But his aunt with type 1 was found dead in bed.
"Dead in bed...is THAT what D-I-B stands for? Is that strictly a diabetes thing?"
Yes. When a perfectly normal healthy person with type 1 diabetes goes to sleep and doesn't wake up in the morning, they call it 'dead in bed.'
Just like no pediatrician will tell me I can let the baby sleep on his tummy because it's 'unlikely' that I'll lose him to SIDS, no one should tell a mother that it's 'safe' to stop testing their child in the middle of the night. That's a HUGE personal decision.
You can stop, and I can let the baby tummy sleep...and we can both be fairly confident that all will be just fine. The odds are so low...but it is a decision that you would have to be able to accept for the rest of your life.
Most D-moms find themselves awake at 3am. I can't say that I blame them.